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Next Stop: Success! Building a Sustainable and Effective Transportation Program

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A TravelMate participant sits on the metro train holding an iPad.

In 2014, The Arc of Northern Virginia collaborated with software partner ONEder to develop the award-winning TravelMate program. TravelMate provides virtual support on a smartphone or tablet, facilitating more independence using the bus, train, and other transportation. By the end of the second year of the program, 96% of users had increased their ability to travel more independently, and nearly half were able to travel completely independently.

How was the TravelMate program born?

In 2013, The Arc of Northern Virginia received a grant from the Federal Transit Administration to develop more travel trainers for individuals with developmental disabilities. There was most certainly a need; at the time there was only one travel trainer at the Washington Metropolitan Area Transit Authority dedicated to working with individuals with developmental disabilities for all of Maryland, D.C. and Virginia. Kymberly DeLoatche was hired to coordinate the project and in her search for a well-liked travel training program, she found that a universal option didn’t exist. Most staff just kind of “did it on their own”. At the same time, Metro had completed a travel training study, and one of the primary insights was that individuals with developmental disabilities took longer to train because they required more repetition of the trip in order to be successful.

A year prior, while Kymberly was attending an Autism Society conference, she noticed an exhibitor who had created an iPad app using real time photos and videos to support an individual with disabilities. She had seen how powerful the iPad could be in the hands of someone with autism and already knew from watching her son, who has Down syndrome that he would watch videos over and over and then get up and perform the action exactly the way it had been done in the video – an “a-ha” moment about how learning uses visual cues.

Putting these two experiences together was the inspiration for the creation of TravelMate. Kymberly called the creator of the software program she saw at the conference and explained her idea about doing an online curriculum that outlines all the steps in taking public transit. ONEder immediately jumped on board and TravelMate was born. It has been a life changing partnership.

Tell us about the community partnership element. What was the process like getting stakeholders and partners on board?

The Arc of Northern Virginia is fortunate to have a wide circle of community partners. When we first recruited individuals to form a Travel Training Project Advisory Board, it was an easy ask. We brought representatives from school districts, the local Community Services Boards, the Department of Aging and Rehabilitative Services, private and public employment providers, and of course parents and individuals with developmental disabilities. Teachers and job coaches guided the development of the curriculum and assessments. Individuals with developmental disabilities were involved in creating and presenting on curriculum, guides, and training programs. Having this level of community involvement from the very beginning is a key element of the continued success of our programs.

What are some secondary effects you’ve seen as a result of the success of the program?

Using visual cues and photos with a touch screen has proven to be a vastly superior format for learning for individuals with developmental disabilities. TravelMate allows each individual to use a format (visual checklist, choice board, social story, or real time photos or videos) that works best for them. The technology also allows them to get the repetition they need to succeed without having to actually perform the task with a job coach or teacher. Working with schools, transition teams, and employment providers in the community provides a more seamless transition for the individuals from school to the work environment. From the very first training program in 2014, we saw school programs adding more curriculum time for travel training and not just “making it up on their own” as they had been doing in the past.

What – if any – are your next steps for expanding the program’s scope or reach?

The Arc of Northern Virginia has already created and launched the companion to TravelMate called EmployMate. It is like having a virtual job coach in your pocket. Because the ONEder platform is 100% customizable to individual needs, a job coach or teacher can go to the employment site as they normally do, create needed activities, monitor performance, and adjust the curriculum accordingly from their laptop.

With the success of these two curricula, The Arc of Northern Virginia’s Tech for Independent Living team is creating additional ‘Mates to address other daily living tasks. In development now are: DailyMate, for daily home living activities; MoneyMate, for budgeting and banking; SocialMate, for navigating personal and professional relationships; and SafetyMate, for navigating interactions with law enforcement and safety tips for home, work and community.

How can other chapters start programs like this in their communities? 

Any chapter could write a grant for funds for training and licenses to start a program like this in their community. We started with using 5310 Mobility funds from the Department of Transportation’s Federal Transit Administration.

Without having to recreate the wheel, other chapters that have employment programs could use our ‘Mates curricula immediately with their current clients. The curricula can be provided directly, or a chapter can use a “train-the-trainer” model as we have done, to engage partners in the community. For any additional information, feel free to email Peter Leisen, Project Coordinator, at pleisen@thearcofnova.org or phone 703-208-1119 ext. 112.

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The Arc Responds to Three-Month Extension of Money Follows the Person Passing Congress

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Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities. We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

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Two of The Arc’s Programs to Receive Prestigious Zero Project Awards

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The Arc of the United States is pleased to announce two of its programs, Wings for Autism®/Wings for All® and the National Center on Criminal Justice and Disability (NCCJD)’s Pathways to Justice®, have been named 2019 Zero Project Awardees. The Zero Project is an initiative of the Essl Foundation that recognizes and provides a platform for the world’s most innovative and effective solutions to problems faced by people with disabilities around the world. The Arc’s programs are being recognized this year for outstanding contributions towards promoting independent living and political participation, the 2019 Zero Project Awards’ themes.

“The Arc of the United States has long fought to ensure that people with intellectual and developmental disabilities (I/DD) are included in all aspects of society, and that the civil rights of people with I/DD are respected in every context,” said Peter Berns, CEO of The Arc, “We are proud that Wings for Autism/Wings for All and NCCJD’s Pathways to Justice will be recognized as Zero Project awardees this year.”

Pathways to Justice and Wings for Autism are among 76 policies and practices selected by an international group of 3,000 experts who take part in a multi-round voting and selection process. The Arc’s CEO Peter Berns as well as leadership from the two recognized programs will accept the award in Vienna, Austria in February.

Since 2013, NCCJD has endeavored to improve the criminal justice system’s response to victims, witnesses, suspects, defendants, and prisoners with I/DD. The Center’s signature program, Pathways to Justice, offers specialized training and support to develop local, multidisciplinary Disability Response Teams composed of criminal justice and disability leaders, including self-advocates, to improve local justice systems. NCCJD has trained over 5,000 justice professionals in 12 different states since 2015.

“Societies can’t be inclusive without equal access to justice for ALL, including people with disabilities. Pathways to Justice is revolutionizing the way the criminal justice system sees and interacts with people with developmental disabilities, laying the groundwork for inclusive justice to take root and flourish across the country,” said Leigh Ann Davis, Director of NCCJD.

Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism/Wings for All is an airport “rehearsal” program created to alleviate some of the stress that individuals with I/DD and their families experience when traveling by air. The program also provides vital training and educational resources on disability competency to airport, airline, and Transportation Security Administration (TSA) staff and volunteers.

From 2014 to 2018, Wings for Autism has held over 130 trainings in almost 60 airports throughout the United States and has supported more than 18,000 people with autism and other disabilities, as well as their families. Additionally, the program has trained more than 1,800 aviation professionals in disability competency and inclusion.

“The Wings for Autism/Wings for All program has successfully helped thousands of individuals with disabilities and their families enjoy the basic right to travel and live independently. Simultaneously, we’ve supported aviation professionals across the country to create safe and inclusive spaces in airports to better accommodate travelers with disabilities. We are honored to be in the company of so many other great organizations who are also addressing independent living issues on an individual and systemic level as well,” said Kerry Mauger, Program Manager of Wings for Autism.

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The Arc Expands “Talk About Sexual Violence” Project to Focus on Men With Disabilities

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The Arc of the United States is pleased to announce the National Center on Criminal Justice and Disability® (NCCJD®) received a grant from the WITH Foundation to expand its successful initiative Talk About Sexual Violence (TASV). TASV was born out of a partnership between The Arc’s NCCJD and the Board Resource Center (BRC) and serves as a platform for educating healthcare professionals on how to talk to their patients with intellectual and developmental disabilities (I/DD) about sexual violence. The WITH Foundation’s grant will expand the program’s current focus on women survivors to include resources about male survivors and the unique barriers they face in disclosing or reporting sexual violence.

Efforts to address sexual violence—even movements like #MeToo—have typically focused on women. However, men also experience sexual violence and have comparatively few resources to support them. Research shows that 14% of men with disabilities will experience violent victimization compared to 4% of men without disabilities. Men are less likely than women to disclose an assault, and men with I/DD may be even less likely due to additional challenges they face if they do speak out about it or report it. Health care providers are generally not asking male patients about sexual assault and may not know how to respond if a patient does disclose. 

NCCJD’s Director, Leigh Ann Davis, who has worked in the field of sexual violence prevention of people with disabilities for over 20 years and is a survivor herself, states: “This is a topic of urgent national importance, and we’ve only begun to scratch the surface when it comes to addressing sexual trauma experienced by men with I/DD. With support from The WITH Foundation, we can expand our current project, reach new audiences, build new partnerships with male-focused sexual assault organizations and plant seeds for prevention, detection, and healing in the future.”

Health care professionals are in a frontline position to educate patients about and potentially prevent sexual violence. The primary challenge facing health care professionals is lack of training and experience in speaking directly to people with disabilities about this critical issue which can have dire consequences in the person’s life when left untreated, both emotionally and physically. TASV will work to reduce this gap in knowledge by creating brief video clips with supporting training materials healthcare professionals can use to educate and prepare themselves for these sensitive discussions.

While this project will focus its efforts in California, the initiative will have national reach and impact. This grant is part of a larger grant program by The WITH Foundation that is dedicated to addressing the issue of sexual violence against people with disabilities. The WITH Foundation has provided close to $258,000 to six organizations to fund a variety of programs that promote comprehensive and accessible healthcare for adults with I/DD.

“It is a privilege to support these efforts as they work to enhance healthcare delivery models, increase the understanding of supported decision-making, and/or address critical issues for adults with intellectual and developmental disabilities” said Ryan Easterly, Executive Director of the WITH Foundation.

 

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December 2018 #HandsOff: Taking My Advocacy to Tennessee!

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#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

This year The Arc was excited to be able to offer a limited number of scholarships to individuals with disabilities to attend the National Convention in Nashville, Tennessee One of the scholarship winners, Ivanova Smith from Washington, shares her experience below.

By: Ivanova Smith

Ivanova Smith takes a selfie and smiles with her husband and child to her right. On November 7th, I got to go to Tennessee for the first time for The Arc’s National Convention! It was a blast. When I found I won the scholarship, my husband and I saved up so he and my daughter got to come with me and see the sights.

While they were out having fun in the giant Gaylord hotel, I was gaining tons of knowledge and networking at the Conference! One of the first things I got to do was participate in the National Council of Self-Advocates Symposium. It was great getting to hear from other professionals and leaders with disabilities speak on topics such as transportation, housing, and how to be effective in advocacy around public transportation. I even got to speak during an open mic session!

I enjoyed the workshops around people who help women with disabilities who were victims of sexual assault. I also really enjoyed the general session where they spoke about legislative priorities and I got to meet new friends!

I support The Arc’s national efforts in wanting to improve education and promoting self-determination! Friday we got to celebrate awardees who worked on efforts on better inclusion at the Catalyst Awards. One of them is actually my Facebook friend, James Meadours. His speech inspired me to keep advocating in my home state of Washington. On the last day, we got to enjoy Nashville and listen to live music! It was a wonderful time!

Want to learn more about The Arc’s 2018 Convention? Check out pictures here.

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The Arc Responds to Final Passage of Farm Bill

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Washington, DC – The Arc released the following statement following final passage of the 2018 Agriculture and Nutrition Act:

“We applaud the Senate and House of Representatives for their bipartisan work on the Farm Bill (H.R. 2), passed this week in the Senate by a vote of 87-13 and in the House by a vote of 369-47. We are pleased that the version of the bill that was passed rejects cuts to the Supplemental Nutrition Assistance Program, known as SNAP, which more than 11 million people with disabilities across the United States rely on to help them eat. Once signed into law, this bill will preserve access to basic food assistance for people across the country, including those with disabilities who rely on SNAP to put food on the table. We urge President Trump to sign this bill into law as soon as possible,” said Marty Ford, Senior Executive Office of Public Policy, The Arc.

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Thankful for SNAP: November 2018 #HandsOff

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#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

By Anne Clinard Barnhill

My sister, Rebecca, is sixty years old and one of the most amazing and resilient women I have ever met. When she was born in 1958, autism was barely whispered among doctors. The general public knew nothing about the condition. Becky wasn’t officially diagnosed with autism until she was thirty-seven years old.

She is living life as fully as possible. She shops, goes to the Senior Center for exercise two or three times a week, goes to Weight Watchers, and continues to hone her independent living skills. Several years ago, she participated in a program called Beyond Academics at the University of North Carolina. Innovative and person-centered, this four-year program allowed Becky to attend classes on campus, just like traditional college students — only she studied self-care, cooking, budgeting, and other independent living skills.

After graduation, she made the choice to live independently with a roommate. They split the rent and utilities, but food is purchased on an individual basis. Becky blossomed in the independent living situation. She made friends and learned her way around Wilmington. She cannot yet use public transportation, but that is one of her goals. She has procured a part-time seasonal job, which she loves. She works one afternoon per week from Memorial Day through Labor Day.

One thing that makes this life possible for her is the Supplemental Nutrition Assistance Program (SNAP). Millions of people with disabilities, like Becky, rely on SNAP to access the food they need. Last week, SNAP helped Becky prepare for Thanksgiving as she was able to gather the ingredients she needed to prepare a tasty meal, with help from family and friends. Support from SNAP helps her to purchase to healthier foods like fresh fruits and vegetables. As a breast cancer survivor, she needs to eat a lot of fresh food to help keep a recurrence from happening. She makes wise choices with her SNAP food monies and this helps keep her healthy. If SNAP were taken away, she would be forced to purchase cheap processed foods and would rarely afford fresh produce.

SNAP enables Becky to continue living independently. She is happier, healthier, and SNAP helps make it all possible. I beg Congress to protect the SNAP program.

Becky has the courage of a lion and the heart of tiger. She has braved many situations with dignity and such gumption. She needs a little help from her friends — don’t we all? SNAP is her friend and I pray she continues to receive this, as without SNAP, her whole life — the life she has built brick by brick — will be at risk of tumbling down.

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Filling a Vacuum for LGBTQ Supports: A Conversation With The Arc Mercer’s Steve Cook

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Last year, a client at The Arc Mercer approached Executive Director Steve Cook to confide in him about his struggles feeling accepted in the community. It was an “aha” moment for Steve – and one that led to the creation of what is believed to be among the first initiatives that exists to meet the support needs of individuals with disabilities who identify as LGBTQ.

Members of The Arc Mercer's SNAP program supporting LGBTQ individuals, including executive director Steve Cook, are seated on a couch smiling for the camera.

Tell us about the SNAP program and how it came to exist! What type of activities does it involve?

When I realized that someone we served in our agency was struggling with how to successfully integrate into the community as an LGBTQ individual with special needs, I researched other possible resources and found none really existed that comprehensively provided integrated community settings and professional counseling.

I decided The Arc Mercer would commit to developing a program that not only met the needs of someone who identified as LGBTQ with special needs, but that we would share our experiences to allow others to replicate the program.

That is basically how SNAP was formed.

How is the program helping you build a presence and connections/partnerships in your community – both with media and with other organizations?

SNAP has garnered incredible media support due to its unique status as one of the first of its kind in the nation.

As we shared this organization’s mission throughout New Jersey, and the region, we found leaders of other organizations are receiving feedback from their frontline staff about the need for LGBTQ supports for those that they serve. This has led to an incredible surge in awareness by organizational leaders about the need for this type of support.

How do you create that safe space where individuals to feel comfortable participating in the group activities?

One of our first steps was to identify staff within our organization who sympathize with, and support, the mission of SNAP.

This allowed us to build a supportive environment for those we serve to engage in community activities and dynamic professional counseling sessions (through our health care clinic) that focus on creating integrated and safe community events and professional counseling sessions (individual and group), that have evolved into a social environment for members of SNAP to thrive within.

What does the future of the program look like to you?

It is our hope that the framework of our current SNAP organization, including integrated community events, and a comprehensive counseling program (that encourages individuals, their friends and family, and others who identify as LGBTQ with special needs, to openly communicate about how they feel and their goals), will be able to be replicated throughout the nation.

Why do you think establishing groups like this is important? Do you have any advice for other chapters looking to build out programs that address traditionally underserved/under-represented communities like this?

Chapters of The Arc have always strived to find best practices and share them with other chapters nationally.

I think our experiences will allow others to build programs that create safe environments for those we support to be integrated, healthy and safe in the LGBTQ community.

My advice to any chapter looking to replicate our program is to identify those in your organization who support this mission and encourage them to organize events with LGBTQ organizations in local colleges, schools and community organizations.

More importantly, identify counseling resources to support staff, family members and those we serve who identify as LGBTQ.

This may be hard, but thanks to a suggestion by a member of The Arc’s national team (Allen Miller), we are exploring the use of telemedicine (counseling) through our Healthcare Center.

Of course, I am always available to talk directly with anyone who wants to explore forming a similar group at stevencook1@msn.com.

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Back to School Tips for Families of Students With Disabilities

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Two sisters with glasses, backpacks, and tablets stand against a white background, with other students unfocused behind them.The start of a new school year can bring both excitement and anxiety for students and parents, especially for families of students receiving special education supports. Students with disabilities who struggle with change may need extra help making the transition to a new school or teacher.

To help families start the new school year off right, The Arc@School offers the following tips:

  • Prepare your children before school starts by discussing any anxiety your child may have, setting clear expectations, and slowly transitioning back to your child’s school routine and schedule.
  • Review your child’s IEP prior to the start of the school year to ensure that the goals, support services, and placement are still appropriate. Make sure to consider any progress or regression your child may have experienced over the summer or since the last IEP.
  • Meet with your child’s teachers and related services providers before school starts to review the IEP together and ensure everyone is on the same page regarding implementation of the IEP. This is also a great opportunity to establish a communication plan with the teachers and related service providers!
  • Once school begins, allow your child some time to get used to the new classes, teachers, and schedule, and your child’s teachers some time to get used to your child’s unique strengths and needs, but do not wait too long to address any issues that might arise!  Having open and respectful communication and dealing with challenges early can help avoid much bigger problems later.

If you have any concerns about your child’s services or supports, you can visit The Arc@School to learn more about your rights and where you can find help.

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Creating Healthy Habits With The Arc of Kentucky, The Arc of Central Kentucky

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Throughout 2017, The Arc of Kentucky and The Arc of Central Kentucky participated jointly in The Arc’s Health and Fitness for All program. Health and Fitness for All addresses increased obesity propensity in the disability community by teaching healthy eating, portion control, and physical activity and helping individuals with I/DD adopt healthy habits and lead healthier lives. Sherri Brothers chatted with us about the chapter’s work, the importance of teaching healthy habits, and how other chapters can do the same.

Tell us about your chapter’s Health and Fitness for All efforts. How did you hear about the program? How are you tailoring the program to your chapter and participants?

Health & Fitness was created in Kentucky because of the obesity rates, sedentary lifestyles, and unhealthy eating habits. Some of our individuals were not well- educated in nutrition facts or the options of exercise. The Arc of Kentucky heard about the program through The Arc of United States. We created an individualized program for each person. One young man with autism in our program loved writing but had no interest in exercise at all. A psychologist used the young man’s interest in writing to facilitate a relationship with others who loved writing. We created a program where he would start working out on a stationary bike while at the same time sharing his stories with his peers and the psychologist. He now enjoys exercising and looks forward to class each week.

Sherri Brothers, executive director of The Arc of Kentucky, participates in a fitness class with another instructor and two students..

Why do you think it’s important for people with disabilities to learn about living a healthy lifestyle?

Chronic ill health can diminish an individual’s enjoyment in and ability to engage in all that life has to offer. By providing people with I/DD an opportunity to make informed decisions about their health by educating them on the value of proper nutrition and exercise and the impact it can have on how they feel physically and emotionally, we are giving them the tools to own their well-being. That is the key to success.

Was the program successful? How so?

Yes! We have seen so many positive outcomes in the time we’ve been running the program: program weight loss – 168 pounds; lowered blood pressures, regular participation in exercise programs; participants learning how to shop and making healthier food selections; learning how to prepare healthier meals; and improved self-esteems and friendships made. At our three-month post-training check in, Annie has lost an additional 38 pounds and wants more information about healthy diets. Josh is watching his diet and is using less salt. Shaud is drinking more water and changed to drinking diet soda over sugary drinks. Nyketta has joined the YMCA to be able to continue her exercise.

Are you planning on expanding the program past the conclusion of the 12-week training? How so?

We passed the 12-week program and are planning to offer an additional four weeks of fitness classes in the fall and four weeks of cooking classes. We are also starting The Health & Fitness for All in other local chapters around the state. I am visiting with them, providing materials to them, and replicating the program which was very successful in our chapters — although encouraging them to tailor the program to their individuals’ needs. This just gives them a starting point – some helpful materials, ideas to start creating field trips, speakers, activities, games, etc.

What advice do you have for other chapters looking to implement health and lifestyle programs to enrich the lives of their constituents?

My advice is to look at the program as an enjoyable lifestyle change for the individuals. Think of it as creating a fun atmosphere for them to create the class, participate as the leaders in the class and the games. For instance, you teach a dance class, and then have each participant lead their favorite dance routine.

Tell us about all the great things your chapter is doing! If you’re interested in being spotlighted, please email Pam Katz at katz@thearc.org.